August 5, 2010

Tired of the Grind

My mom mentioned to me that the other day that when we had talked I seemed discouraged about Andrew's progress, but when she read the blog later everything seemed very positive in my post. Her comment got me wondering if I am only posting on the good days, about the good stuff that is happening. I suppose that could be true, to some extent. On the good days (like the past few posts), I'm excited to share the news and on hard days am less apt to post at it for time reasons, or just pure exhaustion.

The NICU is a grind. It's full of uncertainty. Phrases I've grown to hate regarding the NICU:
  • It's a roller coaster.
  • Take it day by day.
  • It depends.
  • Every baby is different.
Each one is true, but none of them bring any comfort to the parents who are worrying about their children. No one says "everything is going to be OK" because no one knows that for sure. While Andrew's progress is amazing, there are still many obstacles he needs to overcome and doubt and worry easily sneak into my thoughts. Some days, all the noise, bells, and alarms around me in the NICU are enough to drive me to tears, and I wonder when (or even worse, if) our sweet boy will be able to come home. Yesterday was one of those days.
  • When I got in, Nurse K told us that Andrew has a hernia - two, actually. Hernia's are very common in preemies, and I had read all about them in my preemie book and know they usually aren't too serious. They occur when a loop of intestines slide down into the groin area through a hole in the abdomen wall (that usually isn't fully closed in preemies.) The only way to fix them is with surgery, which will hopefully happen when he gets older and stronger. Unless, of course, they become hard or kinked, which could require emergency surgery (it depends!). Right now there is no immediate danger, and they will check on it every diaper change. Either way, another surgery for my boy at some point! So unfair.
  • Andrew's weight gain has stalled. He hasn't lost weight, but has been hovering around 950 - 960 grams for about a week now. It's been on the doctor's and nurse's radar for a few days now, and they have increased his feeds (he's now getting 5.8 ml/hour) as well as the calories in the milk (fortified now to 24 cal/oz). He's still pooing/peeing like a champ, so they aren't worried about any obstructions or his tolerance at this point. Hopefully the changes will get him moving in the right direction (take it day by day!).
  • I tired to kangaroo care again, and he wasn't tolerating it all. After a perfect morning, with his O2 requirement down around 37%, he began desatting immediately. We put him back in the isolette after only about 5 minutes. Not the end of the world, he probably just needs some time to recuperate after his big day prior, but disappointing to mom who wanted to get her hands on him again (it's a roller coaster!).
  • Andrew got his last dose of Decadron (steroids) today. So now, we hold our breath over the next several days to see if he can hold his own without the help, or how big his backslide is breathing-wise. His oxygen requirements probably will increase, and there is a chance they could have to put him back on the ventilator. We'll just have to wait and see (every baby is different!).
  • His temperature probe was acting up, and so the bed alarm kept going off saying he was too warm. Preemies can't regulate their temperature, so they rely on the warming of the isolette to keep them comfy. His temp probe fell off at one point, so the bed began to "think" he was cold (b/c the probe's reading dropped) so the bed warmed itself up. That warmed Andrew up too (when he really didn't need it) and so he was too hot for awhile. No big deal, but the freaking alarm is just so annoying and did a great job frazzling my nerves even more (#!%*!).
In all, nothing really bad happened today. Really, Andrew was holding his own and then some. From the nurses perspective, he had a good day. But, there were lots of frustration for me, and the combination of all the little things had me frazzled. Both J and I wish we could really celebrate each success, but honestly often we both feel like we are waiting for the next shoe to drop. What makes it especially hard is that we don't know how his NICU journey will last. We are tired of the grind. But, we love our son, and will be back there again today and will face whatever the day brings.


Anonymous said...

I am very sorry that you had to go through all this and it is very unfair. I wish I know the right thing to say to make it all better. I am crossing my fingers and hoping and praying that he gets better and come home soon.. - KB

Libby said...

Well, here is one thing: your pals want to share it all. We'll join you on the roller coaster, take it day by day and listen to the "what the @#$%'s". And most importantly, we'll keep the entire Boyden family in our thoughts and prayers.


Anonymous said...

We are here for you and I am so proud of all you have put down, good and bad, in this blog. Just think how your honesty could help someone going through this today, next week or next year. You are leaving an amazing legacy for Andrew and I think it helps J and you too. Love you all and could not be more proud of you friend. - Jackie

Beth said...

I'm so proud of you for putting everything out there. I think about you guys every day and am in awe of the strength that you and John have. You are both amazing people and amazing parents. Love you guys, can't wait to see you again at the end of the month.


Anonymous said...

We are completely with you on the terms you hate but fully understand. Robin and I are so tired of hearing that "it's a rollercoaster" that I have actually begun asking how tall one has to be to go on the ride. Another one that I am tired of is, "she's very sick." Actually I don't see my girls as being sick so much as underdeveloped.

Quintin and Robin

Kristin said...

Your post brought back a flood of memories for me. My son was born at 27w5d and spent 87 days in the NICU (but who counted?). He's now 2and running, climbing, and generally being a toddler!

After he'd been in the NICU about 4weeks I wrote a single line in my journal: "It's like you've lived the hardest day of your life, and then you get up and do it all over again."

Hang in there. You are doing a wonderful job for your son.